Update and news from appointment

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chop456

chop456

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We had Paige's 4 month follow up appointment today. I need to first say that I am so happy we were able to find a neurologist that Paige is comfortable with. She has a way of comforting Paige yet keeping the reality of Paige's diagnosis in the conversation. She recommended that we increase her Lamictal to 250 mg. Paige still has some morning myoclonics and she did have a myoclonic cluster night about a month ago. We were all comfortable with the increase. I am hoping her dizziness does not get worse with the increase. She "cleared" Paige to run the Disney Princess 1/2 marathon in February. I am a nervous wreck because we will need to get up at 3am to get on the bus that takes us to the start line and I know what a 3am wake up call can do to Paige. Bur the dr. was very good about telling Paige she needs to read her body and understand her limits as well as accommodate and modify things to fit her active lifestyle. So now this out of running practice mom has a 1/2 marathon to train for so I can run with Paige! Overall it was a good appointment! We do not have to go back for 6 months! Thanks for reading and listening!
 
That all sounds very promising! I found that whenever I did a transition on Lamictal, I experienced a little dizziness until I was at a stable dose for a few weeks. So there might be a little transient dizziness with her increase.

Hope the training goes well. I'm so impressed that you'll both be running a half-marathon!
 
Good to hear the appt with the Neuro went well & I hope Paige goes well with the medication increase
Good luck with the training :).
 
Yeahhhhhh! Esp good to hear she's comfortable with the neuro.
 
I'm sure you've thought of this and I know it can be difficult financially, but is it possible to stay overnight in a motel or with friends/family the night before the run to allow you more of a sleep in? Good luck!!
 
Hello Chop,

Congrats on a positive appointment! I have to mention though that when we say getting an accurate epilepsy diagnosis is like running a marathon, we weren't talking literally!! =) Good on you for supporting your daughter all the way! Adding to RiffRaffMama's suggestion, could Paige start gradually getting up earlier in the few weeks leading up to the race to help her body clock adjust? I know lack of sleep can be a trigger in itself but is she able to take a nap on those days to compensate? I personally find its about my body clock, more so than the number of hours I sleep. Keep us posted!
 
We will be in Florida 2 days prior to the race and I am planning on having Paige adjust her sleep schedule for a few days (maybe more) prior to the run. I already called the race officials and asked if we can have accommodations to get us to the start line a bit later and they said they did not think so. I will call again and ask when it is closer to the actual race. Her neurologist really seemed to think that Paige will be able to adjust and be ready to run. I am cautiously hopeful.
 
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